Autism from the inside

Tag Archives: Life

As I child the lack of visual and facial coherence meant that the visual world didn’t pry for the bonding and connective meanings that relied of multiple visual stimulus’, faces meant nothing and visual association was hollow, flat and soulless so I didn’t apply the connections of “me”, you” and “I”.

My first friend was “water” not the interpretive word but the emotional recoil that I gathered and like a friend it was there to give and take. I would see the puddles, flush the toilets and knew from them what would come. A timely wave of energy which was a akin to expectation as the water flowed the twinkles of spray in the surrounding area and the light shards bouncing off the sun in the morning.

“Bear” was used as a transitional object he was large, course and scratchy and would sit next to me in the car when my parents went out and about.

The Mirror in the bathroom and other places was a constant source of fascination it took me until 16 to released that “him” was “me” but I found it a comfort not to be alone.

On a pre-conscious level I was “sensing” and “tuning in” to an apart of myself which I wasn’t able to make the connection with in real time so it was slow process from infancy to mid-teenage hood. Having a level of aphasia, visual-verbal agnosias delayed the process but I am thankful to have given myself a “project” to work on and to bridge the gap between my world, the world and other peoples worlds.

This was a feeback loop in which I was finding other through self and self through other (the sense that the person in the mirror was “other”) this brought upon the slow bridging between my internal world of sensing to a level of intereptation.

Talking yesterday to friend about speech and language I thought it was interesting to see progression the inner feelings of someone who has gone through significant challenges in receptive and expressive language. I can remember a whole host of disconnected emotions that came flooding towards my person when speech slowly developed in terms of expression, a whirl wind of patterns, phonics and placements in my collective unglued memory and figured out by the ages of eight a system of external placement, phonic placement and movement sequences that helped me connect with the outer world around me.

However what was challenging from both emotional and integration point of view was taking a step away from the system of “sensing” (Donna Wiliiams 1998) a state of pre-consciousness, patterns, thematics and “feelings” that answered and questioned, that supplied and didn’t demand, that sang but didn’t shout, that gave and took in relevance of the moment it was captured. A place which “being” was the name of the game and “storing information” was redundant and futile.

It was a world in which in my own way I had found connects through external sensory modulation as explained so switching my “systems” was much a painful and frustrating experience as I can ever remember my connected chatter annoyed and scared me and the connected words would then bring upon the attention of connected response to which I was not readily to respond.

So was it like losing a friend well at that point yes I was making subtle yet significant transition into the world of interpretation, cladding, hierarchy and applied meaning for someone who was profoundly meaning deaf and meaning blind to those concepts it certainly makes sense why I wanted to “go back” into a world of “sensing” it was in reflection both a prison and sanctuary, solitude and disarray and home and wilderness all at once.

We (human beings) all come from the system of “sensing” however my personal experience is being “there” for a longer allotted period and many ways I am still there with reflective gaining and personal developmental progressions that have come with it.

Cancer is a hard thing to talk about my Dad was diagnosed in 2009 with a type of blood cancer called Chronic Lymphocytic Leukaemia which attacks the white blood cells and comprises the auto-immune system. Early warning signs included fatigue and hard node underneath his armpit. After this diagnosis he got a second which would change the outlook of mortality and treatment in which he had genetic mutation of the p53 gene which is called the “guardian angel” gene for cancer. He in 2010 had been given three months to live if he didn’t have a bone marrow transplant (which came from Germany and the person had the same genetic deletion) it was then he had chemotherapy the the transplant.

He told me that one of the most difficult things prior was signing a piece of paper acknowledging that there is a 25 percent risk of him dying through this procedure. I am sad to say it but one of the worst things about the experience was the wards lack of knowledge on Autism and Asperger’s Syndrome and by letting staff members know actually made an already compromised and critical situation much worse he was name-called, laughed at and escorted out of his room during the his last day he belongings stuffed into black bags and told to wait in the communal room despite him almost dying almost three times in the 12 weeks due to fungal pneumonia. I trained them in autism for an hour.

The drugs he takes now is something called perdnisolone which was created in the 1940s in is a type of immune-suppressant which in the short term is very good but in the long term can have dramatic and even life-threatening consequences. My Dad has been on this drug for over six years and the effect on his life have been drastic mood swings, mania lasting days, explosive and odd reactions to sometimes the most trivial of comments, impulsive behaviours, personality changes (narcissistic and self-centred ideals quite the opposite to my Father’s kindly nature), psychotic episodes and paranoia. The hardening of the trunk of his body means he finds it hard to breath (dermatological disease), high blood pressure and muscle spasms and the constant flip-flopping of drugs (if you go over 20mg of pred you must take additional tablets to counter the side-effects of this). His body is steroid dependant meaning that I feel there should be alternate looks into helping a person safely ween off this drug.

Recently my Dad went “cold turkey” for over a month because of these side-effects his nervous system went into shock in the second week causing him to vomit, blood pressure to drop and so he self admitted to the triage in which he was giving pred as the only option. Chemotherapy, Radiotherapy and Predisoalone are all legal but destroyed and suppressed my Dad’s immune system to the point that he wasn’t my Dad anymore. I know there are other family members going through this I would like to say you have my sympathies.

I would to point out that my Dad is a positive and assertive person and through continued self direction, realist attitude, objectivity he strives to live his life as full as he can. 😊

Stretched along a small fractional time-span of life which I have lived in comparison to the elders around me, I sought to wonder my inked mind of swirlyness in which fragments put out of the ghost-like fog like bearing lanterns in London in times of old.

My mind is blocked in certain areas of passage but not as much as it used to be in terms of having a “seeing mind” and “hearing brain” that boggles with pre-filtered thoughts that extract readily through my fingertips as if a giant piece of knowledge was wailed with me knowing why or what it is used for.

I would say if anything my mind is “human” as subjective as a term should be, but never the less as true as the sun in the sky and the forests in the wood that is in mind at the heart of the matter, the core that runs the coils, the heart-mind that beast my inner cavern of light and darkly thoughts .

My eager soul is not wanting the when whole cake of me to be seen as “autistic” because in the end if you had an “autistic cake” would it really just taste of “autism” I think it tastes of so much more drenched a mouth of fruitful flavoursome differences that colour my being stretched on a canvas of existence.

Be yourself, don’t define yourself by your autism” – A self-assured life of an inspirational speaker, trainer and author on the autism spectrum – Paul Isaacs

“Awareness is the greatest agent for change.” – Eckhart Tolle. Paul was diagnosed with high functioning Autism at the age of 24. He has set himself apart by embarking on a noble mission of spreading awareness of Autism to enable the masses to help people with Autism live fulfilling lives. Paul has written several books about Autism including “Autism: Inside Perceptions of Communication, Interaction, Thoughts & Feelings” and “Living Through the Haze Autobiographical account of my life with Autism” which was a #1 bestseller. Paul has also been active delivering speeches to a variety of audiences such as parents, people on the Autism spectrum, social workers and at events for Autism charities and organizations like The National Autistic Society.

Thank you Paul for your time. Your interview will inspire all our community. The interview with Paul Isaacs was conducted by Inspiration Matters () in May 2018. More Info

: You have presented speeches on various subjects related to Autism. What has been the most popular subject for your speeches and how are these speeches helping you with spreading awareness?

P: I would say that aspect of autism being a “fruit salad” by Donna Williams (Polly Samuel) which breaks autism down into “pieces” she was objective, compassionate, real and honest in her words, findings and outlook on autism and so I carry on her model which is about education, mythbusting and not being swayed by the politics and rhetoric which is found in the autism world.

: How and when did you decide to start writing a book? Which of your book assignments was most challenging and why?

P: I was diagnosed with autism in 2010 at the age of twenty-four I was born in 1986 and went though mainstream education. My Mum thought I was deaf and blind as appeared not to “see” or “hear” however this was to do with visual perceptual disorders and being profoundly meaning deaf. I didn’t gain functional speech between the ages of 7/8 years old.

So that was a slice of my early developmental history when I wrote my first book I thought of the title and just typed in a pre-conscious state this meant that my hands on “auto-pilot” in other words I typed finished the manuscript then read it back and learned about my life. I do find writing a challenge I feel I show more of my connected self through writing than in any other medium which I would say art is a close second.

: What has been the most important milestone in your life. What is the impact of this on your life?

P: I would say being bullied was an important milestone to come out of. In many ways I send thanks to the people who bullied me over the years as they gave me a framework of how not to treat other people. I see my self not as victim but as a victim of circumstance which is completely different I take a lot of positives from these experiences and try and mould them into something objective, bitterness is a horrible thing to hold onto and as human beings have varying lifespans I do not want to was my life living in the past.

: What is your favorite art creation and why? What is the importance of art in your life?

P: From the age of 5 I was tampering with colours smearing them on to pages. I would say my favourite artwork was done during the passing my Gramp in 2017 it really helped me to come to terms with his passing and also the art was a way of remembrance and saying goodbye to his physical form and keeping memories of him alive.

: What kind of changes are needed to our current education system for children with special needs? Do you see any difference in today’s school system compared to when you were a student?

P: I have made reference to the late Polly’s “Fruit Salad” and I would say using her framework would not only help people with autism but also other development disabilities, learning difficulties, mental health issues, development of identity, personality, environment and or learning styles. What ever the package mare be “autism” or not it would certainly look at the students as rounded human beings.
Of course many progressions have been made however the educational system in general is rather generic and stale in terms of how information is present to students so maybe there needs to be a massive shift in the educational system as whole.

: What is the biggest concern for parents of children with autism? How do you think their concern can be resolved?

P: Being listened to as a human being, their worries, concerns for the future as a term of resolve although that is a big question to ask I would say it will always boil down to the people you meet and the environment you are in. So being non-judgemental would be a start and opening up an honest dialogue.

: Who is your inspiration?

P: The late Polly Samuels she was a great inspiration to my autism work, speeches, training and overall philosophy, she was an empath, a natural comedienne and always made you think “what if” she challenged the “status quo” in so many areas in her life. I enjoyed our skype chats she made me laugh and I think that is special if people can do that.

: What is your favorite place to visit? What do you like about that place?

P: I really like Oxford and the buildings, restaurants and gardens it has is such a beautiful setting I like the colours, the textures, the smells it is so familiar yet so new at the same time.

: What tips/advice do you have for those in our community who want to spread awareness?

P: Be yourself, don’t define yourself by your “autism” you are more than that, do not get into the negative politics of militants in the autism world I have seen the damage that can do to people, your story and life is of equal value regardless.

: Any special message for our community?

P: Walk on your on path, tread in its peaks and troughs, ride its waves fierce and quite, invite people to join you share their journey’s treaded also.

When we look at “autism” looking at personality types is just as important as any other factors. We could look at these aspects of a human being they are very much the “soul” of the person they pepper one’s temperament, personal outlook, emotional regulation, friendships, relationships and aspects of social and emotional interaction.

Identity Crisis

For people who are on the autism spectrum not all their “being” is dictated by the diagnosis that they have. This of course will vary from person to person depending on what part of their “fruit salad” are impacting and how they view their personhood within that. Is it hidden by language processing disorder? Is it being tempered and challenged by health issues? Or are there underlying mental health issues that are being called “the autism” when they are not?

Autism Isn’t a “Collective”

Some people see their autism as “ego-syntonic” that is all their person and they feel it all of the time, others like myself see their autism as part of their “being” this means that other factors come into it such as environmental factors, mental health, identity and learning style all human being are made of up these things . For me it seems to over simplified and reductive to suggest that people on the spectrum share common goals, values and outlooks as a collective experience.

The “Sameness” Machine

“We” do not all come from the same place, we do not have a carbon copy autism “fruit salad” that is shared from person to person. That means that one should be seen as an individual not just a sausage machine of traits. People are born with no labels what so ever and no one person is defined by “one word”.

I think of Polly a lot and as it is coming near to a year since she has passed and autism awareness month. I think of the valuable and human lessons she taught me and other advocates who keenly listened and understood not only her perspective on the matter but her overall out look and ethos.

Autistic Person? Or Person With Autism?

I think when I was born and all that was around me that I wasn’t fully aware of yet, the people, trees, the buildings, the modern world, the natural world. I think of cladding and chosen identities and when comes to defining a person by one aspect of themselves. I often wonder and worry about what that means. If we see everything as the “autism” from the moment one gets up to the moment one goes to bed what is left?

Cannot we see the other aspects the mould a person such as the environment they live in? The personality types they have? The mental health conditions? Their sense of identity? (other than being “autistic”) And their learning styles?

If we are addressing “autism” surely we should be looking at the bigger picture rather than tired and easily digested rhetoric such as “all autistic’s are logical, literal thinkers” or “all autistic’s have special interests” not taking into account the broader perspective on neurological and biological aspects, the social emotional aspects and very specific wants and needs of that person themselves and/or their families and loved ones.

An “Autistic Mind”? Or a “Human Mind?

Last time I checked there is no such thing as a mind cannot have be clear cut as “autistic” and “non-autistic” many aspects to do with information processing can have an impact on presentation. Such as a person with social-emotional agnosia not being able to read body language, facial expression and/or tone of voice, aphasia and being able to express and/or retrieve words and apraxia with living in a body that doesn’t obey its commands of the “owner”.

Personality types in human beings regardless of autism effect the presentation of the person such as being solitary and a preference for being alone, idiosyncratic and not confirming to the cultural and social expectations and conscientious and wanting logic, linear thought and perfection to name but a few.

Balance

If we ditch the rhetoric, the cash-cows, the money makers, the politics and get to what is “real” then that is the greatest and most honest foundation of them all. True empowerment is knowing what something is and working from there not making things up to suit the make-shift package you want to “sell” to people. I think there is nothing wrong with showing the example of just “getting on with one’s life” as the greatest one.

I am not famous, “special” or “unique” words like that scare me. It puts me on some invisible pedestal that quite rightly I don’t deserve nor want to be on. 😉